Today’s guest blog comes from Jonathan Smith, a longtime ally of RESULTS, who first partnered with us on his brilliant, challenging film on TB in minerworkers, They Go to Die, last year.

On Monday the 27th of October, as part of the 45th Union Conference on TB and Lung Health, we were delighted to once again hear from Jonathan Smith as he delivered a talk to launch “The Human Spirit: Our Hope in the Fight Against Drug Resistant TB”. The Human Spirit Project is a collection of individual stories that show the various battles fought against the TB epidemic.

We were so moved by Jonathan’s passionate articulation of why hearing real people’s voices is so important, we asked if we could share the text of his speech with you.

Before reading Jonathan’s speech, we suggest you watch this short video about Thembi Jakiwe. Entitled, the ‘Strength of a Woman’, the short video gives an insight into the life of 12-year-old Thembi Jakiwe who is suffering from MDR-TB. This empowering video shows how Thembi has become a leader among her peers, as well as her medical team, and  compliments Jonathan’s important message.

Hello, I would like to thank Hon. Min. Motsoaledi, Dr. Mosidi, Ms. Moelich and Thembi for speaking and sharing their story this evening.

My name is Jonathan Smith and I am a lecturer at Yale University and a PhD candidate at Emory University. I have made no important discoveries. I have not carried out any pioneering research in the field of tuberculosis, and I have not made any policy decisions that will change the course of this epidemic. I am an ordinary, unremarkable researcher and observer of the tuberculosis epidemic.

Through observation I have seen many sides of the epidemic around the globe. I have lived with strong men and women as they took their last breath, their family watching in their home as their loved one suffocated from a curable disease. I have seen impassioned debates behind closed doors in Parliament and Congress, where people lay their careers on the line because they believe in what’s right. I’ve slept on the floor of college flats with advocates looking to leverage the collective power of individual voices – working as hard as they can to sign up just one more individual – to sustain momentum in TB funding. I’ve played cards through the night in a desolate clinic, with staff who refuse to go home to their families in fear of missing the next shipment of anti-TB drugs. I come to you today with a simple message amalgamated from almost a decade of such observations.

The tuberculosis epidemic will not be overcome in one fell swoop. There will be no grand sweeping gesture that accounts for its demise. There will be no lump sum that can pay off this treacherous disease.

These are things most of us already know, but we don’t think about critically. Thinking about it critically reveals that the TB epidemic is not one large, singular epidemic, but rather it manifests itself as a collection of singular, individual battles fought everyday by the people living with and working in tuberculosis.

Let me say this again to be absolutely clear: the global tuberculosis epidemic is a collection of individual battles. It is individual people fighting the same disease. And – depending on their role – doing so in very different ways.

This is a slight but important distinction. It indicates that in order to overcome the TB epidemic, our best chance is in sustaining these small, individual battles just as much – if not more than the – grand, overarching plans to eradicate this disease.

As epidemiologists, politicians, and researchers, we largely regard successes and failures in the TB epidemic as a fluctuation in data. A 45% decline in TB mortality is a success. A 300% increase in MDR-TB incidence is a failure. We can go on and on – I can draw you any graph or tell you any statistic. And make no mistake about it, these statements are true and I want to say in no uncertain terms that these data are important, but these statements and data do not simply reflect the epidemic as a whole – they reflect the collection of outcomes of these individual battles – and if read alone, these data miss the beating heart of what truly constitutes a success or failure.

We have all heard that we should change the conversation from data to people, and I fully support that. But when we say that, most of us default to images of the poor and suffering. We default to emotion without reason.

Changing the conversation from data to people doesn’t mean that it has to be in the form of a bleeding heart, tear jerking story. I support this effort more practically than that.

If we change the conversation – if we look at the epidemic as a collection of individuals across a spectrum, instead of a global epidemic – we can see that successes and failures are on a fundamentally different scale, and they are seldom characterized by numbers. More importantly, we can see the individual battles that are fought, and what we can do to sustain them.

I have lived with strong men and women as they took their last breath. Sometimes making it through one night is more success than we will ever know.

I have seen politicians lay their careers on the line for policies that will save lives. Sometimes risking it all is a success that will never be noticed.

Tonight, we all saw a young girl take her injection with deliberate determination, because she knows if she doesn’t, the others children won’t. This success is immeasurable.

This is the heart of overcoming the TB epidemic: defining success as an individual battle that has been won, and failure is an individual battle that has been lost – whether it be the loss of a life, a failed policy, or a missed shipment of drugs.

This is why we came up with the Human Spirit Project. We want to begin to shift the conversation from data to people in a meaningful way. We want to make it beautiful and engaging, yes, but more than that, we want to characterize the epidemic as a collection of individual battles – that this shift doesn’t mean focusing on patients, but also on the researcher, innovators, policy makers, and medical personnel. Everyone has a role in the TB epidemic.

Hopefully Thembi’s story struck an emotional chord with you. But the purpose of Thembi’s film is not to be a bleeding heart story that makes you feel good with needless emotion. Although one of the goals was indeed to establish a personal and emotional bond, the purpose of the film is to show one individual’s battle. If you strip away her beautiful, child-like personality and adorable smile, you will see that at its core it is a story about a person knowing their fight, fighting their fight, and contributing to the success in the TB epidemic. That’s all. It is as simple as that.

So we should each ask ourselves, as individuals, what is our fight?

The TB epidemic wont be overcome in one fell swoop. It will take hard work – sustained hard work – and coordinated work – all towards a greater good – to overcome TB.

In my office, written on a small piece of paper above my computer, are the words, “Remember why you love this.” It is a reminder to me to always look at the epidemic as a collection of individual lives.

I am an ordinary epidemiologist. But this doesn’t mean my fight – one that presses for answers to the hardest questions facing the TB epidemic – is any less significant.

We call this project The Human Spirit because that’s that is indeed our best hope in overcoming this epidemic. The human spirit is a collection of individuals with a relentless determination to overcome this epidemic, and to do so with tenacity and ferociousness. TB can beat our drugs. It can circumvent our policies, and it can elude our borders. But it cannot beat our human spirit.

Thank you, and I look forward to continuing this conversation.

Jonathan Smith can be reached by email here.